How to Assemble a Caregiving Team

By Winnie Yu

Whether it’s driving mom to the doctor, doing dad’s laundry, or providing 24/7 care to an aging relative, many Americans these days are familiar with the rigors of caring for a loved one. According to the Family Caregiver Alliance, 78 percent of adults in the U.S. who receive long-term care at home get all their care from family and friends, mostly wives and adult daughters.

For the caregivers, the task can be overwhelming. Studies show that caregivers are prone to depression, stress and anxiety. They’re also more vulnerable to high blood pressure, poorer immune function and an increased risk of dying.

The task is especially daunting if the care recipient suffers from Alzheimer’s disease—not just because the disease can be so challenging, but also because the responsibilities can last for years. “When you’re dealing with someone with Alzheimer’s, you’re going to be doing it for a long time,” says Donna Schempp, program director for the FCA in San Francisco. “Most people with Alzheimer’s have had it for 3 to 5 years before diagnosis and will have it for 5 to 20 years after diagnosis. When people start being a caregiver for someone with dementia, they often don’t think about the long haul.”

Taking a team approach to the task is essential for the caregiver to preserve her own well-being. “If you don’t get help in caregiving, it’s going to hurt you,” Schempp says. “It’s going to hurt your body. It’s going to hurt your mental health. It’s going to hurt your spiritual health.”

To make matters worse, long-term caregiving often results in isolation for the caregiver. “You’ll be surprised at how quickly you can become isolated from family and friends,” says Linda Rhodes, Ph.D., former secretary of aging for the state of Pennsylvania and author of Caregiving as Your Parents Age. Studies have found that the longer someone is a caregiver, the more cut off from others they become.

The only way to reduce the impact is to find others to pitch in. “Having help eases the burden,” Schempp says. “And you don’t have to be in crisis before you look for help. You should get help along the way before a crisis happens.”

What’s Stopping You?

Many caregivers have a hard time asking for help. They may identify themselves as “The Caregiver” and have difficulty sharing that role with others. Or they may be perfectionists who think others won’t take care of mom the way they would. “You’ll start to feel that it’s easier to just do things yourself, or your parent will become so dependent upon you that he or she never wants you to leave,” Rhodes says.

Some caregivers slip into the role so gradually that they don’t even think of themselves as caregivers. What starts out as making occasional meals for mom turns into a daily grind that involves doctor visits, grocery shopping and medication management.

It’s possible too, that some caregivers know they need help, but are unaware of the resources available to them in the community, or that they’re so immersed in the day-to-day duties that they don’t have time to seek help.

Many other caregivers simply have trouble accepting help from others. “Caregivers seem to have difficulty asking for help for the person they are caring for and even for themselves,” says Marion Somers, Ph.D., author of Elder Care Made Easier.

What many caregivers fail to realize is that if they don’t care for themselves—and lighten the burden—there may be no one around to care for their loved one. “It’s not surprising that many caregivers pass on before the person they are caring for does,” Schempp says.

To get in the practice of accepting help, Schempp recommends having a list of specific tasks that you need done—and keeping that handy. “If someone asks, ‘Is there anything I can do?’ you need to learn to say yes,” Schempp says. “And if you have that list, you can say, ‘Yes, I need someone to walk the dog, or I need someone to stay with him while I get my hair cut.’ The key is to be specific and to have a list of things for people, so they can pick the things that suit them.”

Schempp says many people actually enjoy helping out. “People offering help actually feel good when they do something good for someone,” she says.

Identifying Helpers

If no one is offering any help, it’s time for you to take a more proactive approach to lining up a caregiving team. Start by identifying the tasks you need help with. Is it paying bills? Preparing meals? Driving to doctor appointments? Bathing and hygiene? After you know what needs to be done, it will be easier to identify the right people for the job.

When you’re looking for help, here are several resources to consider:

Family members. Turning to siblings is only natural if the person you’re looking after is a parent. Though you may be the lead caregiver, it’s critical to let others know that they need to play a role, too, even if it’s sending money, so you can put mom in adult day care a couple hours a week, or making phone calls to arrange dad’s appointments. But don’t forget other relatives, such as your spouse, children, aunts, uncles and cousins.

Friends and neighbors. Depending on the relationships you have, friends and neighbors can be another viable source of help. And while you may not ask a neighbor to do dad’s taxes, you might feel comfortable asking her to watch your kids while you run your mom to the doctor’s. Whatever you do, be clear about what you need them to do and how long you’ll need that help, Somers says. “People are more likely to lend a hand if the role and time commitment are both clearly defined,” she says.

Community organizations. Many communities have service groups set up specifically to help caregivers. The ElderCare Locator, sponsored by the Area Agencies on Aging, is one place to start. Another: Lotsa Helping Hands.You can also get information from local churches, senior centers, and government agencies. Once you start looking, you may find a whole network of services available to help.

Hired help. If you have the resources, you may consider hiring people to be part of your caregiving team. Hired help might include a geriatric care manager, who can help you plan and orchestrate your relative’s care, especially if you’re trying to do this long distance. You might also considering hiring a home health aide, house cleaning service, a handyman, lawn care or transportation services.

Support groups. Whether it’s in person or online, a support group should be part of any caregiver’s team—not so much for the recipient, but for the caregiver herself. A support group can serve as a place for you to vent your frustrations, ask questions about specific challenges and get information about community resources. Look for support groups through your local hospital’s community education program, Rhodes suggests. You can also find groups through health associations. Also, check Facebook: Alzheimer’s and Dementia Support Group and your local Alzheimer’s Association chapter.

Respite care. Most caregivers eventually need a break from the rigors of caregiving. That’s when you should find someone to provide respite care. Whether it’s a couple of hours a week at an adult day care or a weekend break provided by your sister, the goal is to give you time away from your duties to recharge. “You have a right to take care of yourself, laugh, keep up your interests and not allow caregiving to consume you,” Rhodes says.